Addisons Disease

[limor-86]

Hallo,

Am new here and so encouraged by all the posts.

Was diagnosed with addisons disease 3 years ago and currently using Hydro cortisone tabs 30mg per day.

I have been Experiencing Severe fatigue lately and mild headaches.Would like to hear from anyone using the same how has been your experience so far.

I must admit this journey has not been smooth,crisis here and there but now am stable.

Kindly help.

Thank you.

[SlowDragon Administrator]

Are you also diagnosed as having a thyroid problem?

If so add your most recent results and ranges for TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

If not diagnosed, ask GP to test these

[limor-86 in reply to SlowDragon]

Yes i have taken all the tests as indicated..

FT3 3.48 pmol/l (Ref.2.50-8.3)-Normal

FT4 21.35 pmol(ref 9.00-20.00)-High

Thyroid Antibodies -TPO And ATG 0.34 iu/ml (Ref< =5.61)

Microsomal( TPO) antibody titre serum 1.08 iu/ml (ref < =4.11)

TSH <0.1 mlu/l (Ref 0.3-4.2)

Thank you.

[SlowDragon Administrator in reply to limor-86]

These thyroid results seem odd. Are you in the U.K. They are unusual ranges

Are you on Levothyroxine?

FT3 is low

FT4 is high

This suggests you're on Levothyroxine and poor conversion

Have you also had vitamin D, folate, ferritin and B12 tested

Low vitamins can affect conversion

Useful to have ultrasound scan of thyroid to double check for Hashimoto's. Not everyone has raised antibodies

heyhashi.org/hashimotos-low...

Also it's good idea to test TG antibodies , but this would need doing privately as TPO are negative

Is Addison's autoimmune?

[limor-86 in reply to SlowDragon]

Am in Kenya.

Will have the other tests done.

This information is really helpful.

Thank you very much.

[limor-86 in reply to SlowDragon]

No am not on levothyroxime,Just Hydrocortisone alone.20mg in the morning and 10mg in the evening.

thank you.

[humanbean]

Hidden is knowledgeable on the subject of the adrenal glands. I've just tagged her, and if she feels able to comment, and she sees the notification, then she might be able to help.

Deecam has recently been diagnosed with Addison's.

[Hidden in reply to humanbean]

Ha! Just replied!!

[Hidden]

Hi I have adrenal insufficiency due to removal of a pituitary tumour which caused Cushing's, now the tumour has gone, I don't produce cortisol. I'm on just over 20mgs a day of HC. Have you joined the Uk Addisons disease society? It's well worth joining for help & advice. Also if you are on Facebook then there is UK Addisons info & support group which has some very knowledgeable people in it. How do you take your HC, ie what times & how do you split it up? There is a lot of research now to suggest taking smaller doses more frequently helps with a lot of symptoms. HC only lasts for between4 -6 hours in the body, so it could be that you are going long periods in between doses when there is very little or no cortisol in your body. So I take my HC split into 5 doses a day, sometimes 6 depending on my level of activity.

[limor-86 in reply to Hidden]

I have my HC 20mg at 6am and 10 mg at 3pm.

Been very consistent.

Thank you for sharing.

In my country this is a very rare condition and no one understands.But thanks to God i found this amazing group.

[jimbrleykim20]

I'm afraid fatigue would seem to be one of the main issues. I take 25mg hydrocortisone:- 10mg on waking, 10mg at lunchtime and 5 mg at around 4.30pm. I find this works best for me. From your results above it seems that your body is not converting FT4 to FT3. I had the same problem and, after reading about it online, had to beg to be put on T3 tablet (Cytomel). It certainly made a big difference to the way I feel. I hope you feel 'better able to cope' soon.

[limor-86 in reply to jimbrleykim20]

Wow Thank you.

This is amazing .A whole new idea bumped into me.

Kindly share if you also have knee joint pains or this is a different symptom all the same.

Will consult my endocrinologist to see what can be done .

Once again thank you.

[limor-86 in reply to limor-86]

Do you still use Cytomel?

Or was it a short time medication?

Thank you.

[Runner95]

Hello, I have Addison’s and Hashimotos Disease. Both of these autoimmune diseases can and do bring on fatigue, muscle and joint pain, bad headaches and more. I have to follow a strict diet to stay healthy in addition to taking hydrocortisone 25 mg daily and NP thyroid. I am also Vitamin D deficient and take a high dose supplement for this weekly. I also take a Magnesium supplement at night. Even with all of this I can become very tired/ drained and especially in stressful times or when I come down with a cold. I still have Addison’s symptoms from time to time and also hypothyroid (Hashimoto's disease). I go to bed early. Sometimes this is due to having bad headaches. I have learned to manage my disease, when to relax and take care of my health. This is very useful. Cortisol levels can change due to many different factors. You have to figure out what works for you. I have always enjoyed exercising and still do. Balancing this with Addison’s Disease/ adrenal insufficiency is hard but it helps with my hypothyroid symptoms and a little bit of exercise is healthy for all of us. When I need to take a nap, I do. My advise for you would be -to learn how much hydrocortisone you need daily and when you need to dose up due to colds, etc. Find a way to relax, manage your symptoms and health and never feel bad when you don’t feel well and need to take care of yourself.